Ethicaland LegalIssues Relating to End-of-Life Care · Ethicaland LegalIssues Relating to...

Ethical and Legal Issues Relating to End-of-Life Care

End-of-Life Care Study DayApril, 2019

Dr Craig Gannon, MSc, [email protected]

mailto:[email protected]

• Princess Alice Hospice, Esher, 1995 -– Medical Director, clinical ethics committee

• University of Surrey, Guildford, 2012 -– Visiting Reader, ex-ethics committee

• Association for Palliative Medicine– Ethics Committee, 2009 -

• Royal College of Physicians– SCE QWG, Exam Board 2010 -2016, SSG, 2016–

• Publications / teaching– Ethics in BMJ, JME, IJPN, CE, NE– MSc, MA, University of Surrey, St Mary’s University– APM Conference

Jobbing ConsultantNot Philosopher, Lawyer...

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J7 to J14 of M25Care Area ~1,000,000 Population

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• Ethics– Basic theory– Autonomy– Withhold / withdraw treatment… CPR

• Law– DNACPR– Doctrine of Double Effect– Euthanasia / physician-assisted suicide– MCA / best interests

• End-of-Life Care– Under-pinning focus

Plan…

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Be Provocative… to Help…?

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• Explore clinical, ethical, legal principles– Generalisations... not case-by-case– Theory first, then apply to practice

• Share an opinion– No absolutes, not right vs. wrong– I’m not necessarily ethical…!

• Healthcare isn’t always ‘ethical’– No perfect answers, just compromises– Realistic expectations…?

NO Answers… NOT Tell…!

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Clinical Ethics

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Who Here is Alreadyan Expert in Ethics...?

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• Our choices…– Test of our behaviour / character

• Our opinion…– View on others’ behaviour / character

Ethics is Everywhere:We’re All Life-Long Learners...!

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Good Care Needs More than Just Brains / Facts…

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“Medicine is a science of uncertaintyand an art of probability”

» Sir William Osler (1849 – 1919)» The “father of modern medicine”

We Need Clinical Ethics…

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Be Provocative…How Do You Rate Yourself…?

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How many of you are abelow-average doctor / nurse...?

Be Provocative…

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...Dad, are you the best doctor in the world…?

Be Provocative…

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No…!


Be Provocative…

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[tears…!]

No…!


Be Provocative…

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[tears…!]

No…!


...it’s okay, I’m average…!

“Average”… Wasn’t Humble…?

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Collusion…Should I Tell My Patients…?

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50% chance of seeing a better doctor... if they see someone else...!

“Average”… Truth Was Even More Arrogant…?

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?

Unavoidable Reality…!

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50% of you are abelow-average doctor / nurse...

Reassuring…You Are Not ‘Junior’ Anything…!

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50% of you are aabove-average doctor / nurse...

How Ethical is Your Prescribing...?

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Well, I don’t need Ethicsto prescribe a NSAID…!

• You want to start a patient on a NSAID

• How do you pick, from 23 pages of NSAIDs in BNF…?

What Most Influences Your Prescribing...?

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• You want to start a patient on a NSAID

• How do you pick, from 23 pages of NSAIDs in BNF…?

What Most Influences Your Prescribing...?

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Random… or youropinion, your choice…!

• Following the leader “creep”

• Fashion “sheep”

• Latest trials / newest “gullible”

• Individual judgement “arrogant”

• Effectiveness “cavalier”

• Side effect profile “defensive”


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• Cost-effectiveness “miser”

• Favourite old text “historian”

• National guidelines “technician”

• Trust formulary “goody-two-shoes”

• The free pen “moth”

• Patient’s request “abdicator”


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Ethics Spans Everyday Practice to the ‘No So’ Everyday...!

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Liver Transplant Surgeon, Queen Elizabeth Hospital, Birmingham

Ethics Spans Everyday Practice to the ‘No So’ Everyday...!

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Consent

Trust

Fitness to Practice

Assault

Professionalism

Whistle blowingAutonomy

Values

Collusion

Harm Good intentions

How Ethical is Your Opinion, Your Choices...?

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Maybe I do needNormative Ethics…?!

‘Normative Ethics’ Made ‘Easy’...!

• Provides means to test our care– Overall approach to guide how people / you should act– Three key ways to check is / was that right…?

• [1] Duty-based ethics (deontology)– Do duty

• [2] Consequentialism– Get result

• [3] Virtue ethics– Match good character

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• Do right thing– Follow pre-set rules

• Only path matters– Whatever the outcome

• Traditional– Objective, but inflexible

• Risk jobs-worth doctor– Because no DNACPR form, will

start CPR 2 hours too late…!

[1] (Kant’s) Duty-Based Ethics

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• Get right result– Outcomes based

• Only result maters– Whatever it takes

• Modern– Objective, but presumptive

• Risk cavalier doctor– Lie to get a patient admitted,

“dying in hours”, when prognosis many weeks...!

[2] Consequentialism

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Lance Armstrong “wins” a stageTour de France in 2004

• “Good” character– Reflects “worthy”

• Balancing all needs– Ideal vs. naïve…?

• Best fit for Palliative Care– Subjective, how / who judges..?

• Risk drippy doctor– Reflector, no help when urgent..!– Risks abuse – ‘I know best’

[3] Virtue Ethics

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• In theory, cannot ‘mix & match’ or ‘unprincipled’…!?

• Pick one principle you / everyone should follow…

Which Moral Philosophyis Right for You…?

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Duty-Based Ethics:Do You Stick to the Rules…?

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Follow rules… whatever outcome, even if likely patient harm…?

Consequentialism:What Will You Do to Win…?

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Get result… break any rules, even GMC / NMC / law…?

Virtue Ethics:Are You Better than Rest of Us…?

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Do what a person of good character would do; you know best…?

To Help You……‘Find Your Inner Ethics’

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Different Ethical Approaches;30 mph Speed Limit

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Different Ethical Approaches;30 mph Speed Limit

• Duty-based ethics– 30 mph maximum– Law is law, full stop

• Consequentialism– 33 mph usually– Never “done” <34 mph

• Virtue ethics– 30 mph normal max – 35 mph if emergency and safe

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Same Road / Scenario…Late / Feeling in a Rush…?

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• Duty-based ethics

– Always <30 mph as law

– Still no issue…

• Consequentialism– Hit brakes so 29 mph…!

– ‘No’ risk <30 mph [...?]

• Virtue ethics

– Carry on at 35 mph, take the

fine; as need to rush and not safe to hit brakes

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• Moral elasticity and moral multiplicity– Bend / shift ethics to do what you want...!– Real world… dodgy, but increasingly “accepted”

• Is playing clever the new alternative to being ‘worthy’...• Is ethics needed to combat the ‘cake and eat it’ culture…

Un-Virtuous Ethics:Morals… but Only if it Suits…!

You must obey rules… I just want fair play

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I don’t obey rules, they’re just for fools

Duty-Based, Consequentialist and Virtue Ethics are Tools...

• Ethical tools make the situation clearer– Because you can, doesn’t mean you should…!– “YOU” make the decision – must not abdicate this...

• Blended approach– [1] Rules – laws / NICE; presumption in favour but not 100%– [2] Consequences – for who, how sure, what missed...?– [3] Your values – sensible / compassion at what cost...?

• Each have different strengths / weakness – Need to fully explore to make / justify best decision

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Inherent, Transferable Approach from EBM to Clinical Ethics

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Inherent, Transferable Approach from EBM to Clinical Ethics

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Philosophy and Law

Stakeholder values

wishes wider context

Professional Judgement

Ethics-BasedCare

What is Ethics-Based Care?

Gannon, personal communication, 2019

Broke ‘Rules’, Not ‘Worthy’, but ‘Consequences’ Double-Edged

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Broke ‘Rules’, Not ‘Worthy’, but ‘Consequences’ Double-Edged

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12-month community order, 120 hours’ unpaid work and a £10,000 fine

Admitted two counts of assault

Formal warning by GMC

General Surgery, Wye Valley NHS Trust

Liver Transplant Surgery, Queen Elizabeth, B’ham

Applied Ethics

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Back to Basics:The Four Principles

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Beauchamp and Childress; Principles Biomedical Ethics,New York, OUP, 1st - 7th editions, 1979-2015

• Respect for Autonomy

• Beneficence

• Non-maleficence

• Justice

Principlism…it’s a ‘No’ from Me…!

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• Respect for Autonomy

• Beneficence

• Non-maleficence

• Justice

Principlism:Yes in Theory, No in Practice…?

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Do you think we’re over-thinking this…?

• To give any treatment it must be:

– [1] Helpful– [2] Available– [3] Wanted

• If all three, we must provide it

• If not, cannot provide it

• If unsure… offer a trial

Our Duty for Any Treatment…is Simple…!

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1. Is treatment helpful…?– Needed; predictable net gain

2. Is treatment available…?– Provided; in hospice / hospital

3. Is treatment wanted…?– Desired; consent

No Ethical Dilemmas at Bedside;Because No Choice…!

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‘Yes’ X3 = Give it…!

If Simple... Why Do EoLC Decisions Feel So Difficult...?

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Legal

Policy Duty

Conscience

Patient / NoK Colleagues

EoLC Dilemmas Explicit, Just FeelDifficult, We Mess it Up…!

• Misplaced HCP fears create problem– Not unique, any treatment = a treatment– No unique, end of life = part of life– No unique, normal patient / family issues

• Mustn’t abandon normal approach– Our best advice (uncertainties)– Individualised care (different views)– Imperfect, but sufficient (okay, as always)

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• Mustn’t abandon normal approach– Our best advice– Individualised care– Imperfect, but sufficient

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(uncertainties)(different views)(okay, as always)



• Mustn’t abandon normal approach– Our best advice– Individualised care– Imperfect, but sufficient

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In EoLC when more complex, more grey…

We want our care to be certain and

decisions to be unanimous…!

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Paradox; Conflict, Yet...Everyone is on the Same Side…

• No conflict…– Need reassure / remind everyone (ourselves...!)– Manage realistic expectations: HCPs / patients & families

Patient Agenda

OrganisationAgenda

Staff Agenda

Looks Like a Dilemma:Can Become a Fight…

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Conflict

Looks Like a Dilemma:Everyone Can Get on Same Side

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Consensus

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Manage Our, Their, Everyone’sExpectations…

• Be realistic…– Decision as right as possible– Show working out...!– Not binary – not we’re right / you’re wrong...

• Satisfies all stakeholders:– Patients– Families / friends– Professional colleagues– Organisations; employer / professional bodies– Newspapers / media (mostly sensible…?)– Law Courts (after 15 minutes of fame...!)

Ethics Provides the Tools to Address Conflicts...

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Legal

Policy Duty

Conscience

Patient / NoK Colleagues

Argue: reason your starting position

Counter: try to disprove own, seek alternative positions

Inquire: what is the law, what do I / you mean, clarify premises

CPR Decisions at the End of LifeMade Simple...

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Deciding CPR is Easy:Just Do the Right Thing…!?

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• Same as any other treatment

• To give CPR it must be:– [1] Helpful– [2] Available– [3] Wanted

• If all three, must provide it

• If not, cannot provide it

• If unsure… offer a trial

CPR Decisions......are NOT Incredible...!

67Pixar, 2018

CPR Decisions at the End of Life…Not Any More Special…?

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Pixar, 2004

Our powers made us special

Everyone's special, Dash

Problem 1: Need to SplitGood Use from Misuse of CPR...

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• Designed for trauma, intensive care and emergency medicine (1960’s)– Selected use not questioned– Clinical need in acute medical event

• Inappropriate CPR, if unselected– >50% deaths occur in hospital– ~20% hospital deaths get CPR– No clinical need as patient died

Using Common Sense is Our Professional Duty

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vs.

Common Sense Professional Duty

Using Common Sense is Our Professional Duty

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Common Sense Professional Duty

Complementary

…!

• CPR started without ’impeccable assessment’ / ‘indication’

– Only a tiny proportion of people who die in hospital die from

VF or pulseless VT, usually in context of acute coronary

thrombosis

– We have got into a real mess about CPR, because we have not addressed… the indications, contraindications (absolute and relative), complications, mortality, morbidity etc…

– If full CPR were a new operation, it would not get off the

starting blocks…!

– Caldwell, [letter] bmj July 2015

Madness… Indiscriminate Use…!

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• Best of modern triumphs– Best practice when appropriate – Life-saving– Heroic

• Worst kind medical harm– Poor practice if inappropriate – Intrusive, pointless and brutal– Cracked ribs, vomit, incontinence

Problem 2: Good Use and Misuseof CPR Can Look / Feel Same...!

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Problem 3: Most CPR Attempts End in Feeling of Failure...!

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Problem 4: a CPR ‘Order’…That’s Decided by Others

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You will perform CPR…!I don’t like being told what to do…

Problem 5: You Decide if Start CPR at the Time… Not Status…!?

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Forget the form…!You need to decide if it’s best

to actually do CPR or not…!

But I don’t feel able / allowed to decide that…!

Who Holds the Power in Decisions on CPR...?

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1. XXX directs if CPR is a treatment option

3. XXX chooses CPR or DNACPR

2. XXX decides if CPR available

• “It’s the patient who’s the pilot,…it’s the doctor who’s the navigator”

» Sir Cyril Chantler, Chair King’s Fund, 2004-2010

Doctors Are Not Meant toHave Control…

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PatientFamily

Doctor

?

Doctors Are Not Meant toHave Control…

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3. PatientChooses CPR or no CPR

or Best Interests

1. Disease / EBMDirects if CPR is a treatment option

Doctor / nurse does not ‘choose’ anything!

2. OrganisationDecides if CPR available

• HCPs’ ‘ultimate responsibility’– Inform, support, guide

• Most senior clinician responsible for person’s care– Consultant, GP or suitably experienced

and competent nurse» RC(UK), BMA, RCN, 2016

• But no real power– Do not decide to give– Do not refuse therapy

With Great Power, Must Also Come Great Responsibility…!

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SpidermanStan Lee, 1962

[1922-2018]

Do You / Do Doctors TakeTreatments Away from Patients..?

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Like taking candy from a baby…

• Therapy is not started or stopped only as;– Won’t work– Not available– Not wanted

• Important: not the same– Different issues for each– Must specify…

Withholding / WithdrawingNever Happens

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Well, I am shocked

• Court of Appeal, June 2014– DNACPR without knowledge unlawful– If capacity, involve– ‘Convincing' reasons if not involve:

• Belief ‘fail’ not enough• Fact topic ‘distressing’ not enough

» Tracey v Cambridge Uni Hospital NHS Foundation Trust & Ors, 2014

• Principles apply without capacity as in MCA» Winspear v City Hospitals Sunderland

NHS Foundation Trust, 2015

Legally…Is CPR Simply Patient Choice…?

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Must Start with Clinical Decision: Can CPR Help...?

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• Court of Appeal, June 2014– DNACPR without knowledge unlawful– If capacity, involve– ‘Convincing' reasons if not involve:

• Belief ‘fail’ not enough• Fact topic ‘distressing’ not enough

» Tracey v Cambridge Uni Hospital NHS Foundation Trust & Ors, 2014

• Principles apply without capacity as in MCA» Winspear v City Hospitals Sunderland

NHS Foundation Trust, 2015

• Law; discuss if made DNACPR, not decide

Legally… NoCPR is Not Simply a Patient Choice

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Patients Cannot Choose Whatever Medicine They Want

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What is Autonomy…?

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Autonomy = Self-GoverningNot = Get What You Want…!

88Unless super talented, or Justin Bieber…!

Autonomy Doesn’t MeanFree Choice...

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Ferrari 599

VW Golf

Honda Civic

Hmmm, doesn’t CPR look great...!

Wife and3 kids

Modest budget

• [1] Connected self– Impact on family, other patients, HCPs– Family pivotal in best interests, ACP / ADRT– Cultural links

• [2] Considered autonomy– Choice only from what’s on offer

Patient Autonomy isAlways Restricted...

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Harry Houdini1874–1926

• Giving people / patients CPR information / survival rates– >60 years old, understand, halves desire; 41% to 22%– Video big shift understanding (possibly not wishes on ITU)

» Jones et al, 2000; Long & Curtis, 2015

Reassurance fromInformed Patient Choice

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I want every treatment going, but obviously not CPR…!

When Time Comes…Most Patients Understand

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CPR Status Not Specific:CPR Now… then Depends…!

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Qualityof life

Time in Months 1 2

Consider CPREvent in hospital;

CPR is optionunless ADRT

DNACPR

Dying; anywhere,CPR not option

whatever “status”

Boundary for patient: quality of life enough

3

CPR Status Only Default

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Decisions Relating to CPRBMA, RC (UK), RCN, 2016

Multiple Factors Impact on Appropriateness of CPR at Time

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Aim Tailored / EBM Decisions...?Apparently Not…!

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...that’s the worse thing you could have said: I just need the community nurses

to sign the DNACPR forms!

Type of Arrest ROSC Survival

Witnessed In-Hospital Cardiac Arrest 52% 19%

Unwitnessed In-Hospital Cardiac Arrest 33% 8%

Out-of-Hospital Cardiac Arrest Overall 59% 10%

Unwitnessed Out-of-Hospital Cardiac Arrest 21% 4%

Witnessed Out-of-Hospital Cardiac Arrest 41% 15%

Witnessed & "Shockable" with Bystander CPR 53% 37%

Bystander Compression-only Resuscitation - 13%

Bystander Conventional CPR - 8%

Complex, But if Wikipedia can get it Right, Shouldn’t We…?!

97Wikipedia, 2018

• Clinically over-simplified– ACP: good in theory… net gain…?– Clinically flawed, not fixed / binary...

• Misused, only applies CPR– No impact other treatments intended…– But misused as “not back to A&E”– Rationing over-simplified– Political lever…

‘Red Form’ since 2011Reinforces Good and Bad...!

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Recognised all healthcare providers, including ambulance trusts, across South

East Coast NHS region

‘Red Form’ is Not Binding

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Decisions Relating to CPRBMA, RC (UK), RCN, 2016

• No ‘legal’ relevance– Despite described ‘legal’, just notes…!– Not ADRT; yet more influence!

More Detail: ReSPECT Form, 2017TBC if Better or Worse in 2019…

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Fancy a Day Out in Court...?

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• Medical Professionalism– What TO DO... highest– Individualised, one-off – Subjective = strength...!– Best practice

• Law– What NOT to do... lowest– Generic, looks binary– Objective = weakness...!– Defensive practice

Act Within Law Yes, But Not Because Legal... Because ‘Right’

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• 13th century ethical principle

• The bad consequences of an action can be ethically justified if original intent was good

• The bad consequences of an action can be ethically justified if original intent was good

Definition ofDoctrine of Double Effect (DDE)

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• DDE is a staple of medical ethics teaching– Inherent philosophical value – ‘good intentions’

• DDE is recognised in UK law– Theoretical legal need – harm arising from care

• Historical use– Means to free doctors to prescribe morphine for pain at the

end-of-life without legal fears– But... a misunderstanding / misuse in courts

Background to Role of / Value of DDE

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The Road to Hell is Paved with Good Intentions

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• Ironically ‘symptom control’ is one area DDE doesn’t apply– Appropriate symptom control wouldn’t cause death– “Association is not causation” i.e. patients dying with drugs,

not because of drugs

• Paradox; persistent application only to end-of-life care, yet DDE not needed as defence in other specialties:– Chemotherapy-related neutropenic sepsis deaths – >1,000 deaths annually attributed to ‘complications of medical

and surgical care’ (ONS, 2018)

– 1950’s case law now too far out-of-step with current practice

DDE Not Applicable / Not Needed at End-of-Life / Ever...?

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• DDE suggests pursuing a morally good action• Despite foreseeable bad side-effects (including death)• Is still ethical, providing the bad side-effects weren't

intended

• And...

• Provided the action not wrong in itself• Only intend good effect• Harm not desired / harm minimised• Harm not means of good• Overall proportionality

DDE… MisunderstoodToo Complex in Full / Subjective

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• Persisting with DDE fuels misunderstanding– Validates mythology around fatality of opioids in symptom

control at end of life e.g. “predictable opiate deaths”– Common across literature – medical / non-medical – Patients / families / staff / media / public

• Fuels confusion / opioid fears:– From media highlighting of apparent / actual poor practices

with opioids / sedatives at the end of life– Collective ignorance undermines reassurances of good care

DDE Can Inadvertently Mislead

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• Misuse – follows misinformation– Fosters poor practice

• [1] Acting as a barrier to appropriate relief– Too little opioid – falsely fearing right doses could kill

• [2] Falsely reassuring ‘never too much’– Too much opioid – wrongly assuming no restrictions...

DDE then InadvertentlyLeads to Misuse

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• Most worryingly DDE can be easily abused

• [1] Allow unsafe practices...– Covert overdosing to hasten death– Deep ongoing sedation / euthanasia

• [2] Too easy to ‘play’ the courts...?– Doctor can always claim good intentions– Blame harm on side effect of drug, not harm of prescribing

DDE Can Be Too Easily Abused

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• R v Adams in 1957• R v Cox in 1992• R v Moor in 1999

DDE: High-Profile UK Trials –Courts at Odds Clinical Wisdom

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• Acquitted murdering elderly stroke patient– Despite administration increasing ‘substantial’ doses of

morphine to ‘relieve her sensation of pain’ that may incidentally shortened her life

– Because seeking only to relieve pain» Wheeler, Bulletin of Royal College of Surgeons England, 2016» Davies, Willis & George EJPC, 2017a

• Lacks any current clinical wisdom – Wrong drug: what ‘opioid-responsive pain’ occurs post-stroke?

• Central post stroke pain – Amitriptyline best NNT• Spasticity – Benzodiazepine etc… targeted role

– Wrong dose – as opioid-naïve• Why escalate / how prevent harm…?• Doesn’t meet DDE in full...!

R v Adams in 1957Dr Bodkin Adams

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• Guilty murdering ‘terminally’ ill patient with rheumatoid arthritis in considerable pain ‘if not agony’– 2 ampoules undiluted IV KCl, minute or so before she died– Sentence commuted to attempted murder (as body cremated,

causation not proved beyond reasonable doubt…!)– 12-month suspended sentence and GMC no action of note– If he’d used conventional analgesic, both prosecution and

conviction would have been unlikely» Wheeler, Bulletin of Royal College of Surgeons England, 2016» Davies, Willis & George EJPC, 2017a

R v Cox in 1992Dr Nigel Cox

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DDE Means can Deliberately Killwith an Opioid Overdose…?

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No way, that would be bonkers…!

• Acquitted ending cancer patient’s life by giving opioids– Even though he administered an overdose– He admitted helping >300 patients die “pain-free deaths”– On his day off, agreed though list full [i.e. intent to kill…?]– Patient begged for a ‘speedy death’

• Acquitted as DDE…– As his claimed intent was to alleviate suffering and pain

» Wheeler, Bulletin of Royal College of Surgeons England, 2016» Davies, Willis & George EJPC, 2017a

R v Moor in 1999Dr David Moor

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• Courts’ use of DDE outside current clinical wisdom– Guilty of murder if use potassium chloride– Innocent if opioid overdose

• Ignorant of opioid safety as analgesia• Naïve to believe offered ‘intent’ in court…!

Yes, DDE Used as License to Kill…!

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• >450 died after being given drugs inappropriately– Misuse of Diamorphine– Dangerous ranges and no ‘clinical indication’ (20-200mg/24h) – Compounded dangerous ranges Midazolam (20-200mg/24h)

» Report of the Gosport Independent Panel, 2018

• Dr Jane Barton, Gosport War Memorial Hospital, 1988-2000– Husband: she was “doctor doing the best for her patients”

» https://www.bbc.co.uk/news/uk-england-hampshire-44628013

>450 Avoidable Hospital Deaths…Inappropriate Drugs / Doses

117Dr Jane Barton and her husband

It’s Time to Ditchthe Doctrine of Double Effect

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DDE is out of date and not needed

...misleads, & dangerous as so easy to abuse

• DDE is not needed ethically– 4 Principles or 4 Quadrants Approach offer more– In ‘safe’ hands – extra ‘tool’ not needed

• DDE is not needed clinically– Evidence-based practice is only defence– DDE only serves to ‘allow’ care below best practice

• DDE is not needed legally– Bolam & Bolitho tests are more appropriate– Risks ‘bullet-proof’ if misuse / abuse drugs

» Gannon, 2019

Adherence to ‘Best Practice’Supersedes DDE

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Are Euthanasia / Assisted Suicide Good for Our Patients’ Health…?

120

Is this medicine…?

• Moral question – is euthanasia / PAS right or wrong is unanswerable– Abstract idea; what, how, who, when etc… not addressed– Strong arguments on both sides– Society should debate / to have an informed view

• Disclose conflict; personally, more negatives than positives– After 25 years of Palliative Care experience (bias)– Witnessing family / friends deaths (subjective)– Concerns at impact from misuse of doctors / nurses as the

agents of ‘death on demand’

Assisting Suicide is Not MedicineMorally Unclear…

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• Clinical answer - ‘medical’ euthanasia / PAS is wrong– Not medical (no net gain health or well-being)– Discriminatory (all other suicidal patients arbitrarily excluded)– At odds prime duty of care; to try reduce health / social

pressures that make life unbearable and protect vulnerable from harm

– Cannot separate PAS from euthanasia; morally / professionally / and in clinical practice the same

Assisting Suicide is Not MedicineClinically Wrong…

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123


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Surely I’ll just disappear into a painless puff of pink smoke...?

• Pharmacologically PAS is crude / clinically inhumane– Not an appropriate clinical intervention– Suffocation with risk of inadequate general anaesthesia– Too high a failure rate / complications…– Talking to vets, dogs get treated far better…!


125

Make Assisting Suicide Our Duty, As No Conscientious Objection..?

126

Pall Care Doctors mostly say ‘No’, but like asking

turkeys to vote on Xmas…!

bmj, Feb 2019

• Legal answer - ‘medical’ euthanasia / PAS is wrong– No legalisation anywhere in world makes clinical sense– Why restrict so not; when lose capacity, or when suffering is

likely to last more than 6 months, or when physically unable to do PAS themselves... why do people then have to ‘miss out’… exactly when wanted most / gain more… who thinks this make sense…?

– From first-hand reports / the literature nowhere is euthanasia / PAS delivered by doctors in a reliably compliant / safe way –inevitably not safe, as the pretence around ‘safeguards’ is nonsense / undeliverable

Assisting Suicide is Not MedicineLegally Wrong…

127

• Moreover, patients already have legal right to refuse all food / fluids, VRFF and to stop life-prolonging treatments– With full provision all accompanying comfort measures– Faster, more autonomous, can start when lose capacity, works

when physically incapacitated, just as / if not more comfortable way to die etc…

• Crucially, a far better system would be to use the courts and euthanasia / assisted-dying technicians– Simpler and reduce risks, preventing any of wide-ranging

conflicts within healthcare– Fully delivers on desire within society to bring in ‘death on

demand’ into our culture

Assisting Suicide is Not MedicineLegally Wrong…

128

If Euthanasia / PAS was Legal...Doesn’t Mean We Should Do It…!

129Bill Clinton Monica Lewinsky

I did something for the worst possible reason - just because I could

• Medical Professionalism– What TO DO... highest– Individualised, one-off – Subjective = strength...!– Best practice

• Law– What NOT to do... lowest– Generic, looks binary– Objective = weakness...!– Defensive practice

Act Within Law Yes, But Not Because Legal... Because ‘Right’

130

Remember us...?

• Our vision is to ensure that our communities will have the best care and support before, during and after death.

• We are a leader in the provision of multi-professional specialist palliative care and end-of-life care. We aspire to help patients, families and carers feel better, do more and cope with death and dying. To this end we are firmly committed to the continued growth and development of multi-professional specialist palliative care and wider end-of-life care services in hospices, hospitals and within our community.

• We fully endorses the legal right of competent patients to refuse to start or refuse to continue with their medical treatment for any reason.

Potential Organisational Position Statement… Our SPC Role

131

• We acknowledge and respect that individuals have very strong personal views both for and against Euthanasia and Assisted Suicide. Our aim is to create a safe environment where patients feel able to discuss and explore everything that they are feeling and the implications of the clinical options available to them.

• We are not seeking any change in the current law. Partly as the hospice appreciates the complexities and moral uncertainties as to the rights or wrongs of Euthanasia and Assisted Dying / Suicide, but also because of the established risks from hasty or inappropriate actionfollowing requests for Euthanasia and Assisted Suicide.

Potential Organisational Position Statement… a Specific Position

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• Our prime duty of care to try to reduce the health and social pressures that can make life unbearable and protect the vulnerable from harm. Hence, a change in the law on Euthanasia and Assisted Suicide would not change the hospice’s clinical role per se:

• We always provide our multi-professional specialist palliative care and end-of-life care in an unconditional, non-judgemental way according to clinical need, not influenced by any of individual’s characteristics or beliefs.

• We would continue to provide our expert clinical information, guidance and support to demonstrate what healthcare can offer as the alternative to non-therapeutic route of Euthanasia and Assisted Dying / Suicide.

Potential Organisational Position Statement… Our Duty of Care

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Findings...RCP Survey, March 2019

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Meaning...?RCP Survey, March 2019

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Which is the majority view on assisted dying...?

Actual Impact...!RCP’s Move to ‘Neutral’...!

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What is the RCP Playing at...?

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No majority view on assisted dying moves RCP position to neutralProfessor Andrew Goddard, RCP president, March 2019

• What should the RCP’s position be on whether or not there should be a change in the law to permit assisted dying?– [1] Opposed 43.4%– [2] In favour 31.6%– [3] Neutral 25%

• Regardless of your support or opposition to change, if the law was changed to permit assisted dying, would you be prepared to participate actively?– [1] No 55.1%– [2] Yes 24.6%– [3] Don’t know 20.3%

RCP March 2019 Headline Resultsn = 6,885 (29% response rate)

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More than a third higher...!

Less than a quarter state they'll do it...!




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RCP being ‘neutral’ can be justified, but looks embarrassing, like we don’t know and /

or we don’t care…!

RCP doctors clearly NOT neutral on 2 levels:1. We do know; survey showed opposition2. We do care; strong arguments on both sides

Mental Capacity Act,MCA, 2005 since 2007...!

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Competent..? Incompetent..?

Cannot Ever Presume ‘Lacking Capacity’ e.g. in “Dementia”

“The difference between stupidity and geniusis that genius has its limits“

Albert Einstein (1879-1955)

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• [1] Capacity is assumed• [2] Patients must be supported to achieve capacity• [3] Can make unwise decision• [4] Must be in best interests• [5] Least restrictive decision

5 Guiding Principles ofMental Capacity Act, 2005

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• [1] Should be assumed, onus to prove a lack capacity– Capacity is a fluid, spectrum never 100%– Competent or incompetent is binary at a point in time

• Single test– (1) understand, (2) retain, (3) weigh, or (4) express wishes– Sufficient capacity– Time and decision specific

Capacity…Mental Capacity Act, 2005

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• Someone cannot lack capacity:

– [2] Unless all practicable steps taken to achieve capacity

– [3] Merely because they make an unwise decision

• An act / decision made, if someone lacks capacity must be:

– [4] In their best interests• Not defined anywhere, wriggle room vs. arguments…!

– [5] The least restrictive of their rights and freedoms

» MCA 2005

Guiding Principles ofMental Capacity Act, 2005

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Best Interests…Key Patient Factors

• Decisions must reflect patient autonomy– Current view wishes and feelings…?!

• Must permit and encourage person to participate in decision, despite lack of capacity

– Previous expressed (especially if written) wishes & relevant beliefs / values

• For example, religious beliefs • Advance Care Plan (ACP)• Advance decision to refuse treatment (ADRT)

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• Legally, must take account of other views– As far as practicable: – “What patient would want”...?

• Family / next of kin– Close to patient; not confined to blood relatives– Anyone named to be consulted

• Anyone caring for / interested in welfare– Carers, other involved HCPs / discuss as MPT / MDT

• Legal decision-makers– LPAs / Court-Appointed Deputy– IMCAs

Best Interests…Assumes Extensive Consultation

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• Prohibition– If a life-sustaining treatment decision, cannot be motivated by

desire for death– Not decide on superficial judgements or discriminatory by

reference to age, appearance, condition, or behaviour

• Must show that considered all relevant circumstances– Justify decision as being in patient’s best interests– Have “evidence”… documentation

• Make decision such that least restrictive

Best Interests…Other Key Factors

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Where on-going clinical assessment indicates that capacity cannot be presumed, it is essential to confirm if the patient lacks capacity for this decision at this time

Is there a dysfunction of mind or brain?

Does the patient lack at least one of the four

requirements for capacity for this specific decision at

this time?

[1] They cannot understand the relevant information?

[2] They cannot retain relevant information long enough to reach decision?

[3] They cannot use the relevant information to reach balanced decision?

[4] They cannot communicate their decision?

Does the patient still lack capacity, after receiving all practical assistance? If the patient’s capacity could return, can this decision be delayed until capacity is regained, without

risking irreversible mental or physical harm?

If capacity is unclear, or to exclude a psychiatric problem, is it necessary to seek assistance?

Best Interests:Part 1. Test for Capacity

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Have the relative health and welfare merits of any options

relating to the decision been fully considered?

Does the treatment / care option offer a realistic chance of net gain in health and/or welfare (quality of life / quantity of life) and

is it currently available, appear the less restrictive of any equally favourable options, and appear sufficiently practical?

Has the person who lacks capacity been involved to clarify their current wishes / feelings as

much as they are able?

Has the person who lacks capacity been allowed, encouraged and facilitated to participate, as fully as possible, in any decisions?

What is the person who lacks capacity’s current wish?

Has the person’s past wishes / feelings been included to deduce

what the person would have wanted?

Are there any relevant specific written or oral statements made before capacity was lost e.g. an ADRT or ACP?

Are there any relevant beliefs, values or other specific factors that would be likely to influence the person’s decision?

Have any legally designated decision-makers (as is practicable and appropriate) been involved to

deduce what the person would want?

Is there a donee of a registered LPA for health and welfare?

Is there a deputy appointed by the court?

Best Interests:Part 2. The Checklist (a)

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Have all other relevant views (both HCPs and significant others) been

consulted and taken into account (as is practicable / appropriate) to deduce

what the person would want now?

Views of next of kin / patient representativeor IMCA (if no NoK / rep)?

Views of someone named by the person to be consulted?

Views of anyone caring for the person or interested in their welfare? Give details for those that could not be contacted in

time

Have best interests been determined merely on the basis of, or following

unjustified assumptions around irrelevant factors?

Has best interests been determined merely on age, appearance or behaviour?

Has best interests been determined merely on any underlying medical conditions?

Is there sufficient agreement following the best interest process to reach a decision?

Is a second medical opinion, IMCA or DOLS input required?Is further mediation required?

Is more formal legal clarification required?

Best Interests:Part 2. The Checklist (b)

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Planning Ahead...

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...and I thought we’d make your mum DNACPR today, okay?

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Importance of ACP and CP

• Advance care planning is only if loses capacity…!– Help in an unknown future, theoretical– Only where choices– Only when cannot consent– Key (missing) discussions / decisions, iterative but not...!

» National End of Life Care Strategy, July 2008 – Patient-focussed, overlooks family who are pivotal at time

• Care planning is for everyone, all the time– What do now / next, real-time / known future, actual– For that condition, that setting, that moment, iterative– That patient’s wishes, either consenting or in best interests– Family meetings to involve– Short-sightedly overlooked in favour of tick-box ACP

• Prepare• Inform, support, guide• Good communication• Involve all stakeholders• Timely discussions• On-going process

Discussing DNACPR...Do the Basics

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Don’t tell me to get the basics right…!

• “Timeliness” crucial– Avoid “prognostic paralysis”... “not ill enough yet”– Once DNACPR is issue typically too late to start / forced…– As soon as patient / family ready and able, if ever...!

• CPR discussions earlier better... – Easier in advance – theory / more balanced / less emotive– Better still if retains capacity...!– Process; more time to decide / involve others– Within spectrum... refusal of IV antibiotics or LMWH– Rolling discussion NOT rushed tick-box decision...

Mistake is to Delay CPR Discussions till Relevant...!?

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We’ve Made It…!

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Geraint Thomas, Team Sky in ParisTour de France, 2018

Simon Yates, Mitchelton-Scott,La Vuelta a España, 2018

Chris Froome, Team Sky in Rome, Giro d'Italia, 2018

We’ve Made It…!

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Law gives you the minimum…

You can be safe…

We’ve Made It…!

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Ethics gives you the tools…

You make the best decisions…

Thank You

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Does Virtue EthicsApply to All Decisions…?

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Virtue Ethics: Not Lofty Ideal,Just ‘Sits’ Between Two Vices

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Vice: ExcessUnethical practice

e.g. cavalier

VirtueBest Practice

e.g. courageous

Vice: DeficiencyUnethical practice

e.g. cowardly

Common-sense middle ground

Clinical Decisions Fail if Lacking Professional Courage

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Vice: unethicalIf just follow rules / path least resistance; only do as

in notes

Vice: unethicalIf don’t consider rules / do it my way; a blanket

yes / no Aristotle(384 BC – 322 BC)

Need Virtue of Courage:…to Break Rules / Take Risks

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‘Virtues’Aristotle

(384 BC – 322 BC)

Professionalism:Discerning: weigh pros / cons:

treat when appropriate

A consideredexpert view

Need Virtue of Courage:…to Break Rules / Take Risks

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‘Virtues’Aristotle

(384 BC – 322 BC)

Professionalism:Discerning: weigh pros / cons:

treat when appropriate

A consideredexpert view

Professionalism:Shouldering responsibility

is not paternalism

Four Quadrant ApproachJonsen, Siegler & Winslade, 1992; Sokol, 2008

1. Clinical issues 2. Patient preferences

Diagnosis / medical history

Goals of treatment?What treatment options?

Probability of success / prognosis for each option

Best case / worst case / likely case

Does patient have capacity? AssessYes = consent, what do they want?No = will it return / best interests;

Decide Best Interests – inform decision-making; prior expressed preferences or an

ADRT?Consult stakeholders, is there a surrogate

decision maker?

3. Quality of life 4. Contextual factorsWhat distress is the patient experiencing?

Multi dimensional: function / symptom / existential

Difficult to define – person centred

Will treatment improve QoL / be acceptable to the patient?

Religious, cultural, legal factors that need to be taken into account?

Social / family influences... are there conflicts of interest?

Resource limitations, or influence clinical research / teaching?

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